Sharing the stories of those affected by Autoimmune disease

Invisible Illness

The term ‘spoon theory’ was coined by Long Island, New York based blogger Christine Miserandino, a chronic illness advocate living with systemic lupus erythmatosus (SLE). The theory states that those with chronic illness only have so many ‘spoons’, or units of energy, available to them in order to accomplish their daily tasks. This is in contrast to healthy, able-bodied individuals, who have a much greater supply of ‘spoons’ that allow them to achieve all that they need to get done throughout the day.

Christine first created the term after she tried explaining to a friend what it was like to live with the autoimmune disease lupus. After having some difficulty explaining how she lived with chronic pain, chronic fatigue, and challenging symptoms, she realized that it would be easier to explain her disease if she had a visual aid. This is when she handed her friend 12 spoons to represent units of energy, and took each spoon away as her friend described every activity that she had to do throughout the day, including routine items like doing the groceries, cooking a meal, showering, and even getting out of bed. Her friend quickly realized that she didn’t have enough spoons to complete all the necessary tasks in her daily life, and had to make difficult choices, like whether to eat dinner or run an errand instead.

Christine later decided to write a post on her blog But You Don’t Look Sick, to describe her interaction with her friend and the creation of the ‘spoon theory’. This also lead to the development of the term ‘spoonie’, to describe someone with a chronic illness who has to make difficult choices throughout their daily lives on what they will and won’t be able to do.

I think that spoon theory is an excellent way to describe what it’s like to live with an autoimmune disease to any healthy, able-bodied person who may not otherwise understand what you’re going through. This is especially true if you have an invisible illness (when you don’t have any obvious outward symptoms), and others perceive you as lazy, inconsistent, or having poor time management skills.

One of the most difficult aspects of having limited ‘spoons’ is that some friends or family members may not understand why you can’t do certain things, like go out for a fun night on the town on a Friday after work, or why you can’t run a 5k with them, or be a bridesmaid at their week-long destination wedding. These are tough decisions that any spoonie or autoimmune warrior has to make, but, they’re just part of the reality of living with a chronic illness.

On a more positive note, sometimes, have limited ‘spoons’ does force us to choose the things that really matter in life. Maybe you don’t want to go to your Great Aunt’s potluck, but if you were perfectly healthy, you would have begrudgingly gone, just to be nice. But when you live with chronic pain, fatigue and other symptoms, you don’t have the luxury of being a ‘yes-man’ (or woman). You have to decide what is worth your time and what isn’t.

This sentiment was echoed by Estrella Bibbey in the video, Sjogren’s Syndrome: A Place to Begin, when describing her life with Sjogren’s Syndrome. “This kind of illness makes you slow down, it makes you choose wisely, and it makes you want to conserve your energy for the very best things,” she said. “I don’t live my life just willy-nilly, [like] we’re going to do whatever and just pick up the pieces later. It’s a more controlled experience, but we choose the really good things and we make sure our energies are focused on the really good events. When we commit to going to a birthday party, or some other kind of social event, we commit to it and we are really excited to be there, and we made a space in our lives to be there.”

If you’re a spoonie (like me) and I had to give you one piece of advice, I would say to practice self-care, be kind to yourself, and make sure you’re using your limited spoons wisely.

What do you think of the term ‘spoon theory’? Does it accurately describe your life as an autoimmune warrior? Have you ever had to make a difficult decision about using your ‘spoons’? Comment below and let me know!

Lisa Diven was a 23-year old athlete and recent university graduate when she first began what would become a long battle against chronic illness. Armed with a degree in mechanical engineering, she was ready to take on the world. Her health, however, had other plans.

Lisa was running 10 miles a day in preparation for a marathon race when she began to experience pain in her foot. Thinking that it was just a stress fracture, she avoided seeing a doctor until the pain worsened. When she finally did see her physician, he also thought it was just a stress fracture. Six months later, however, the pain had gotten even worse, and Lisa was forced to see a Rheumatologist, who diagnosed her with Rheumatoid Arthritis (RA), an autoimmune disease causing painful inflammation in one’s joints.

Although Lisa was relieved to put a name to her pain, she encountered another uphill battle. As a result of step therapy, her medical insurance required her to use less expensive treatments to prove they didn’t work until she could take the more expensive biologic medications that her doctor recommended. Consequently, Lisa was forced to take medications for six months, during which time her symptoms worsened and she experienced irreversible joint damage. Once Lisa finally started taking the biologics, her symptoms began to improve.

For the next 10 years of her life, rheumatoid arthritis continued to ravage Lisa’s every joint. Though she was able to control the disease with treatment, pain was still a major aspect of her life.

Eventually, Lisa and her husband decided to start a family. Due to the high-risk nature of the pregnancy, Lisa went to a high-risk obstetrics practice. Though she got through the pregnancy okay, she experienced a massive flare three months post delivery, and the medications that she had used with success previously no longer worked. She lost her appetite and lost weight, and she experienced migraines, vertigo, anxiety and depression. Lisa was forced to go on an extended medical leave, and later left her job completely. After seeing various specialists, Lisa was diagnosed with systemic lupus erythematosus (SLE), another autoimmune disease that causes widespread damage to the body’s vital organs, skin and joints.

Lisa is now being actively treated for lupus, all while controlling her existing RA symptoms. She is happy to report that she finally feels like she is returning to being ‘herself’ again. One of the things that helped Lisa the most was connecting with other patients through the Arthritis Foundation, through which she later started a local support group to help others living with the disease. These days, Lisa feels healthy more often than sick, and given her tumultuous health history, that’s a win she’ll take.

To read more about Lisa’s battle with autoimmune disease, visit healthywomen.org.

It is clear that stress can have a direct impact on autoimmune, chronic pain and other health conditions. Autoimmune Warrior shares research on the role of chronic stress in autoimmune disorders in this blog post. However, the nuances regarding the types of stress and how to deal with them are not often something we talk about with a medical physician, or to anyone in general.

The body and mind are inherently connected and emotional stressors can and do impact our physical functioning. Beyond everyday stressors, traumatic events, whether they occurred long, long ago in your early childhood, or something you experienced this year can get stored in your body and can manifest in the form of stomachaches, back and joint pain, or chronic migraines, to name a few. Everyday stressors may refer to issues with setting boundaries with a family member, difficulty speaking up for your needs, or putting your needs last ahead of everyone else.

The effects of emotional stress and trauma on the body’s hormonal functioning and immune system are well researched. Dr. Gabor Mate, a Hungarian physician who has investigated for many years the potential psychological attributes to his patients’ physical illnesses, including breast cancer, ALS and intestinal issues, has found commonalities in his patients dealing with similar health issues. He found links between those who experienced childhood abuse, neglect and/or maintaining unhelpful relational roles and those who had chronic health issues. These connections are described in his book, When the Body Says No.

Stress and trauma impact hormone functioning. Specifically, research has found that cortisol, a critical hormone implicated in managing stress responses, is impacted by traumatic experiences. For example, decreased cortisol levels have been found in women who have a history of childhood sexual abuse and Post Traumatic Stress Disorder (PTSD). This change in cortisol level functioning can impact the immune system (Kloet et al., 2006), as healthy levels of cortisol help to regulate inflammatory response and glucose levels. When too much cortisol is released from the body, it constantly feels as if it is in fight or flight mode (whether it’s a real or perceived threat), which can inhibit the regulation of glucose levels and responses to attacks on the immune system. Click here for more information.

Furthermore, the ACEs (Adverse Childhood Experiences) study conducted by Kaiser, found that the more adverse childhood events you have had, the higher at risk you may be for certain health conditions such as heart disease, breast cancer and diabetes. For more information on ACEs, read Autoimmune Warrior’s blog post. Additionally, click here to find out what your ACE score is.

So what does this all mean? It means that help in the form of psychological healing may positively impact your physical health and decrease the chronic pain. Addressing long-avoided emotional pain from past trauma can (and does!) help. If you are thinking to yourself “I didn’t experience trauma!” but you wonder why those boundaries are so hard to set, you feel guilty if you don’t take care of your parents’ emotional or physical needs, or you’re avoiding social situations (just a few examples), chances are there’s something from your past that may be keeping you from living an emotionally and physically healthier life today. There are many options for helping you in this area, particularly forms of body-based psychotherapy models that can be effective with chronic pain, including EMDR therapy.

EMDR (Eye Movement Desensitization Reprocessing) therapy uses bilateral stimulation in the form of eye movements or alternative tapping to activate memory networks which are linked to maladaptive functioning; in other words, it activates the traumatic memories that are linked to negative feelings and beliefs that we have about ourselves now (for example, having low self-esteem, triggers to not feeling safe when you know logically that you are). During a REM sleep cycle your eyes move back and forth as you process the day’s events. In the same way, bringing up those past memories with eye movements in a safe, controlled environment with a skilled EMDR therapist helps the brain process through the memory and come to a more adaptive resolution. It allows the brain the space and time to do what it couldn’t do at the time that event occurred—process. And that can help remove self-blame or other negative beliefs, and in turn, relieves symptoms of anxiety, depression and PTSD, to name a few. With the relief of mental health symptoms, there is less stress on your immune system and this can improve overall pain symptoms and your energy level. To learn more about EMDR therapy, visit www.EMDRIA.org.

As Bessel van der Kolk suggests, The Body Keeps the Score, so let’s not forget to consider what has happened (or is happening!) in your life which may be contributing to your autoimmune symptoms.

Brooke Bender is a licensed Marriage and Family Therapist and Board Certified Art Therapist, as well as an EMDR certified therapist practicing near Los Angeles, California. For more about Brooke, please visit: www.brookebender.com